We have co-signed an open letter to the London-based chair of the World Health Organisation Neurology Topic Advisory Group asking why ME, CFS and PVFS have been left out of a draft reclassification of the world's diseases.
The letter has been signed by Action for ME chief executive Sonya Choudhury, All Party Parliamentary Group chairman Annette Brooke MP, Forward ME Group chair The Countess of Mar and ME Association medical adviser Dr Charles Shepherd.
It says three terms contained in the last International Classification of Diseases (ICD-10) – Post Viral Fatigue Syndrome, Benign Myalgic Encephalomyelitis and Chronic Fatigue Syndrome – “have been missing from the public version of the ICD-!l Beta draft since early 2013”.
The letter calls on neurology topic advisory group chair Dr Ra'ad Shakir, who is chief of neurology for Imperial College NHS Trust in London, to end public speculation about the omissions by saying how these diseases are proposed to be dealt with in the ICD revision, which is due to be published some time in the next three years.
How can ME be reclassified when there is an abundance of abnormalities as part of scientific research proving that ME is in fact physical/organic. When ME was classified in 1969 by the World Health Organisation as a neurolgical illness there was less evidence to support that theory. Now, because of world-wide research the one thing ME is not is a behavioural disorder. The PACE trial has proved that with its ‘flawed’ results. We the sufferers cannot ignore the evidence and neither should the medical profession. No other disease/illness would be treated with such disregard. There are none so blind as those that won’t see. Research has shown abnormalities in the central nervous system; immune; musculoskeletal; endocrine; cardiacvascular systems.
Neuro-immune illness probably best explains this complex disease.
I think it’s fairly clear what will happen; there’s going to be a fudge and we’ll be throw into this ‘bodily distress disorder’ category so that the psychiatrists can feel that their nasty little con job on the PACE trial hasn’t been in vain. Cracking.
So, in the WHO omitting the classification, where does this leave blood donation and transfussion organisations who will presently ‘not’ receive donations of blood from people diagnosed with PVFS, ME & CFS.
I wish to clarify that, as being originally diagnosed PVFS and later ME, I personally would not consider donating blood, as I beleive it would be completely unethical to do so.